On Tuesday the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines announced that, for the first time, it will include a patient representative as a full voting member of the Guidelines Task Force. Angioplasty.Org reached out to authors of this recommendation to learn more about the new role of patient representative.

When I’ve observed the huge annual interventional cardiology conferences it always amazes me how invisible the patients are. Thousands of doctors gather to listen to hundreds of hours of scientific presentations, symposia and live demonstrations, all discussing ways to improve patient care and treatment outcomes. But no one hears a peep from patients. No one suggests, “How about we ask patients what they think of this new procedure/device/protocol? I wonder how this approach feels to patients; are we addressing the care issues that most affect the patients’ experience?”

In 2006 when the FDA held controversial hearings on stent safety, our editor and a patient from this site were the sole speakers addressing the issue from the patient’s perspective.

So, it’s good anytime one hears doctors talking about the importance of actively soliciting first-person patient perspective, and not just patient perspective as seen from the doctor’s perspective….

As Deepak L. Bhatt, MD, Professor of Medicine at Harvard Medical School and a co-author of the recommendation, told us:

Deepak L. Bhatt, MD

“The ACC and AHA have taken the important step of trying to involve patients in the guideline development process. Doctors realize that the patient perspective is critical and decisions about the value of data cannot be made in a vacuum as professional guidelines are developed. This is particularly true when weighing issues of quality of life or a risk/benefit ratio that may vary depending on the invasiveness of a procedure (medications vs. angioplasty/stenting vs. surgery, for example). Who better to provide this perspective than an actual patient?”

For three decades the American College of Cardiology Foundation and the American Heart Association have established task forces of leading physicians to review evidence, interpret emerging data and publish clinical practice guidelines advising cardiologists in the treatment of heart disease.

This week the organizations announced changes to the methodology for creating these guidelines. The change at the top of the list: inclusion of at least one patient representative as a full voting member in the guidelines task force and on one of the writing committees.

“…the Task Force will invite patient representatives (defined as patients and former patients, patient advocates, or patient/consumer organization representatives) to participate as a member of the Task Force and a GWC [Guidelines Writing Committee] Methods to identify, select, train, and manage RWI [Relationship With Industry] and intellectual perspectives of patient representatives are proposed. Patient representatives will participate in topic selection, patient choices, values, preferences, and shared decision making.

“….Patient representatives could include patients, former patients, members of patients’ families, caregivers, and laypeople with ‘health literacy,’ including scientists, statisticians, engineers, and science writers.”

Ralph G. Brindis, MD, past president of the ACC and member of the ACCF/AHA Workgroup, explained to Angioplasty.Org his perspective on these new changes:

Ralph G. Brindis, MD

“This new methodology document sets the stage for the inclusion, selection, and the training proposed for a patient/consumer advocate for our guidelines going forward. There is full consensus that the perspective of a patient/consumer advocate will enrich the guideline process– particularly in the era of shared decision making along with emphasis on ‘Patient-Centered Care.’

“We at ACC/AHA are quite excited about this addition, and view that it will have substantial positive impact in the guideline writing process.”

The report looks at questions of selection, training and role of the patient representative. In the multi-step selection process, representatives will be nominated and reviewed by Consumers Union and other leading advocacy groups.

It’s a lot to expect one or two people to represent patients to the entire cardiology community. No matter how carefully the selection process takes bias into consideration, it will be one person’s viewpoint entering the room. Plus, the nature of the nomination and selection process appears to ensure that whomever is included will be an active, articulate, credentialed individual with previous experience in advocacy and/or health science.

I hope that more than one person is invited, and that whomever is selected to participate in developing treatment guidelines will establish an open line of communication with the public, perhaps via the internet, and solicit input from patients and caregivers. Many of the most insightful comments we receive in our community forums are from people who are not advocates or spokespersons, but individuals telling their personal stories.

It will be easy for a patient representative on a professional writing committee to get swept up in the jargon of “patient participation methodologies” and “engagement processes” in an inevitable professionalization of the advocacy role.

I urge our new patient representative to bring to bear personal narratives and insights of a broad spectrum of regular patients, to stay connected to the individuals who are on the cath lab tables, and to bring the voices of as many patients as possible into those well-appointed conference rooms, in an effort to inform the process of making heart disease decision-making and care more inclusive and responsive to the human experience of coping with illness.

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